85% of our subjects were female and almost all subjects were Caucasian. The average age was 51 and the average duration of illness was 18 years. For 50% of our respondents, this survey is the only way they are participating in this workshop.

Symptoms:

The 5 most significant symptoms were fatigue, post-exertional malaise, pain, sleep, and cognitive problems. Symptoms that haven’t been studied as much such as multiple chemical sensitivities, gastrointestinal symptoms, and orthostatic intolerance were also deemed to be significant by over 50% of our subjects..

99% felt that their illness was not improving over time, citing worsening of existing symptoms and appearance of new symptoms.

Out of five objective tests we asked about, 66% had at least one abnormal result. For natural killer cell activity, for example, 70% noted an abnormal result. Tests like these could be used as study inclusion criteria, as outcome measures, and as a way to select subgroups for analysis. We believe that studying subgroups may help yield more effective treatments given the heterogenous nature of CFS.

Impact on Daily Life:

Using a standardized measure of physical functioning, we found our respondents to be more disabled than 95% of the general US population. Only 13% were employed, with almost all citing ME and or CFS as the reason for why they could not work. For even basic personal care, 89% needed assistance or had to change their pre-illness routine. On their worst days, 60% were bedridden. On their best days, 75% could only do some light housework or less.

Five example tests to consider in CFS:

Test

Number who got tested

Normal

Abnormal

Not sure if tested/result

NK cell activity

172

7%

70%

23%

Repeated CPET

173

31

63

5

Brain Imaging

216

49

46

6

Neuropsych test

172

31

53

16

Tilt Table

132

16

80

5

For each test, between 40%-60% of respondents answering the question had never had the test before due partly to cost, insurance coverage, and physician resistance to ordering a test; they're excluded from the above table. Results above are those who had the test, think they might have had it but are not sure, or did not remember the result but had the test.

Perspectives on Current Treatment:

75% of people felt current treatments were not helpful or only slightly helpful but not enough to improve their day-to-day function. Patients repeatedly wrote about the need for disease-modifying treatments and not only for treatments that helped control symptoms.

We asked about how well currently recommended treatments worked for the illness overall and for three common symptoms: sleep, pain, and cognitive problems.

Some alternative/ complementary/ non-drug treatments also made the cut. Helpful prescription drugs cited in patient comments included gamma-hyroxybutyric acid for sleep, lisdexamfetamine for thinking, tizanadine/ baclofen for pain, and midodrine/ florinef/ beta-blockers for orthostatic intolerance. In contrast, exercise programs, administered by a professional and part of the current standard of care, were noted by 62% as worsening their health.

The main reasons cited for stopping a medicine were side effects followed by decrease in effectiveness over time, especially with sleep medications. For effective non-drug treatments, cost and insurance coverage were major reasons for discontinuation. Respondents were also concerned about being more sensitive to drugs and the dependency potential of some medications.

Limitations:

The overwhelming majority of respondents to our survey self-identified as Caucasian. This is likely a result of adequate access to care to obtain an accurate diagnosis, Internet access, and membership in support groups rather than an accurate reflection of the epidemiology of ME or CFS. In fact, multiple community-based studies suggest a higher prevalence and more severe morbidity in minority populations.

We did ask about antibiotics, antivirals, and immunomodulators but 1) answers were rather mixed (side effects, not enough time on medicine due to physician/ cost, etc.) 2) sample sizes were too small to come to concrete conclusions. Also, to date, no blockbuster drug has been noted in open patient comments to be very successful by more than a handful of respondents. In addition given the relatively short length/ nature of the survey, we weren't able to subgroup respondents and ask how they did on various treatments, which I think is key to finding effective treatments.